Just yesterday, we installed a brand new CD-RW drive on my laptop - mine had conked out some time ago. Whilst on eBay, he had also bought a new power supply, which sought to fix the ongoing problem with my laptop.
This morning, no power; brand new plug stuck in socket. Really stuck, like something has melted in there. Only enough battery power to fire up and save my most recent work to USB pen, before the laptop, once again slipped into a coma...
So I'm laptopless again. My work was going really well during the last few days. And having the youngest computer, my USB pen won't fit into any available socket - even if I was able to sit at the desktop for long periods, I couldn't access my work.
[...] is promising to go on a mercy mission to Maplin in Middlesborough in order to get a new plug and socket, but that'll be Friday at the very earliest, probably not until next week. And even then, no guarantee that my laptop will recover - especially if something has melted.
I am cursed!
If it is dead, it will have to be replaced; it is more essential than my wheelchair to me. And fortunately this time I have already got my e-mail running through Googlemail so I have most of my addresses and all the e-mail I have received in the last month or so. And pretty much everything was backed-up.
Still, bugger. Bugger bugger bugger. If you'll excuse my language.
Wednesday, June 28, 2006
Tuesday, June 27, 2006
When the falling stars are shooting, And the answer'd owls are hooting
Today I have mostly been editing the book, coming across sentences the likes of
My heart crumpled like a Chinese lantern trodden underfoot.
See I know what I meant when I wrote that, but you can see why I have crises of faith.
I've also been searching the Internet for a riding crop, which is the item my father requested as a birthday present this year. My eyes have been opened to a whole new world, and one with very little to do with riding horses. And yeah, it did occur to me after I had found a suitable item (i.e not made of PVC and pink feathers) that it was perhaps not the most ethical of purchases. Fortunately, having already fulfilled my guilt quotient for the day, I decided that since clearly human beings seemed to get a lot of pleasure out of riding crops, so (probably) do horses.
No, I know that doesn't work. Sorry.
Two bits of stuff for you:
Disability Nation Podcast
An American chap called Larry Wanger has set up a new disability podcast called Disability Nation. I think this project has a great deal of potential; there are three episodes so far. I was unable to access the first one (the site still contains a few broken links), but I listened to an interview with a lady called Patty Dobbs Gross who runs the North Star Foundation, which breeds and places service dogs with children with autism. I found this very interesting - as far as I know, there is nothing like this in the UK.
The other episode I listened to had an interview with Lucy Gwin, the great character who founded Mouth Magazine. Larry himself is a very natural presenter and there's uh... no Jeremy Beadle (apparently, the next Ouch podcast is coming any day soon).
In other disability-related news, this was the funniest story of the last week.
The 2996 Project.
I am not keen to do this myself, but thought some folks may be interested in the 2996 project, to get 2996 different bloggers blogging about the 2996 different individuals that died in the terrorist attacks in the US on 11th September 2001.
The idea is that each blogger who wishes to do this is allocated the name of one of those victims and agrees to write a tribute to them on 11th September 2006 (the five year anniversary). Given that they're trying to get 2996 bloggers involved, I guess they need as much publicity as they can get.
(via Strange Culture).
My heart crumpled like a Chinese lantern trodden underfoot.
See I know what I meant when I wrote that, but you can see why I have crises of faith.
I've also been searching the Internet for a riding crop, which is the item my father requested as a birthday present this year. My eyes have been opened to a whole new world, and one with very little to do with riding horses. And yeah, it did occur to me after I had found a suitable item (i.e not made of PVC and pink feathers) that it was perhaps not the most ethical of purchases. Fortunately, having already fulfilled my guilt quotient for the day, I decided that since clearly human beings seemed to get a lot of pleasure out of riding crops, so (probably) do horses.
No, I know that doesn't work. Sorry.
Two bits of stuff for you:
Disability Nation Podcast
An American chap called Larry Wanger has set up a new disability podcast called Disability Nation. I think this project has a great deal of potential; there are three episodes so far. I was unable to access the first one (the site still contains a few broken links), but I listened to an interview with a lady called Patty Dobbs Gross who runs the North Star Foundation, which breeds and places service dogs with children with autism. I found this very interesting - as far as I know, there is nothing like this in the UK.
The other episode I listened to had an interview with Lucy Gwin, the great character who founded Mouth Magazine. Larry himself is a very natural presenter and there's uh... no Jeremy Beadle (apparently, the next Ouch podcast is coming any day soon).
In other disability-related news, this was the funniest story of the last week.
The 2996 Project.
I am not keen to do this myself, but thought some folks may be interested in the 2996 project, to get 2996 different bloggers blogging about the 2996 different individuals that died in the terrorist attacks in the US on 11th September 2001.
The idea is that each blogger who wishes to do this is allocated the name of one of those victims and agrees to write a tribute to them on 11th September 2006 (the five year anniversary). Given that they're trying to get 2996 bloggers involved, I guess they need as much publicity as they can get.
(via Strange Culture).
Monday, June 26, 2006
Telling it how it is.
I was harping on about sex and disability and got to thinking about the ways disabled people can communicate our limitations. I meant this to be in the context of sexual or romantic relationships, but really it applies much more generally. I also realise some of this advice may seem glaringly obvious, but if it is down here, then it hasn’t been always obvious to me.
It is of course based on the premise that there is nothing to be gained by pretending that your impairment doesn’t exist or is not so severe as it is. Doing this greatly increases the chances of overexertion, embarrassment and awkwardness, physical danger, causing upset or offence to other people and generally having a bad time. This is especially the case with close friends and lovers because these people expect you to trust them and in turn, trust you to tell them anything they need to know.
Nobody wants to make a song and dance about their medical problems or impairments, but the only way to reduce the impact these things is to put certain steps in place. Part of that is to give other people the relevant information. I find the following rules to be extremely useful:
1. Do not include unnecessary medical information.
When people used to ask what was wrong with me, my heart used to sink. This is because I felt that (a) I was obliged to give an honest answer and (b) I was obliged to answer with complicated medical information that the questioner was unlikely to fully comprehend.
In fact, apart from doctors and perhaps my next of kin, nobody needs to know my medical diagnosis. And whilst labels by themselves are no problem, folks do get distracted by this stuff; So what causes that then? Will you get better? Is it going to kill you? Is it contagious? Do you think perhaps the government is trying to poison you as part of a biological weapons experiment?
All these questions and more, I have been asked. None of these effect the way I live my life. And this is one of the main reasons I avoid mention of my diagnosis on the blogosphere (that and the fact that I think I am being poisoned by the government and don’t want them to know I know…).
If you are in any kind of relationship of trust, all a person needs to know is the practical effect of your condition or impairment. Providing a diagram of why this is the case will distract them and make it more difficult for them to take it in. If the medical side is of interest, save that for another conversation.
2. Do not include unnecessary emotional information.
There will come a time in any relationship where you sit down, get drunk and describe your distressing childhood, your tragic accident, your narrow escape from the jaws of death and how you recovered to drag yourself up Ben Nevis by the strength of your little finger.
Like medical information, this stuff is a big distraction. Give people a choice between a factual bit of information and an emotional piece of information, they’ll go for the emotional one and forget everything else. If you say, “I had a nasty accident when I was young and I can’t bend in the middle.”
You’ll get, “My god! What happened?!”
And you’ll have to explain all about it, answer further questions. And after profound expressions of sympathy and admiration, the other person will ask you to pick something up off the floor, having completely forgotten that you can’t bend in the middle.
Use calm, matter-of-fact language. For example, when describing pain, you don’t need to say, “It really really hurts,” merely, “It hurts and I can only stand for a moment” or whatever is relevant to you. I know it may sound silly, but anything which inspires sympathy is going to make it more difficult for someone to take in facts.
3. Keep your feelings in word form.
If you do feel that the piece of information you need to get across is a big deal, or if it makes you very nervous to talk about the subject, it is far better to say as much without it actually being self-evident. It is far better to calmly say, “I’m really worried how you might feel about X.” than to turn bright red, start shaking and express whatever your problem is in a squeaky voice.
The latter looks so uncomfortable that the other person is going to wish to change the subject and put you out of your misery. They are not going to wish to return to the subject because they won’t want to upset you. If you can express your concern in words but calmly, then you have revealed your vulnerability but are still able have a conversation about it. A degree of vulnerability can be attractive; terror is not.
Similarly, if you become frustrated when people let you down and ignore your limitations, state it in plain words, “I am frustrated/ angry/ disappointed.” Losing your temper will cause others to be defensive. And whatever you do, don’t sulk or make a complaint in a roundabout way – if people have forgotten or ignored your limitations, only a verbal reminder is going to get the message across.
4. Give practical examples.
Some limitations like pain, fatigue and perhaps most especially limitations related to mental ill health really need spelling out. Everyone gets achey, everyone gets tired and everyone feels sad or anxious from time to time. You have to make sure they know your problem is much more than that.
The best way of getting any limitation across is to give a real-life example of practical consequences – this is the case whether talking to a potential lover, a doctor or filling in your DLA forms. As far as social and romantic situations are concerned, an example might be that instead of saying, “I am tired all the time!” you might say, “I have a very limited stamina, so I may have to go home early.” Instead of saying, “I’m terrified of talking on the phone!” you might say, “On a bad day, I have to let the answer-machine pick up my calls for me.”
You can also use this to get across information which may effect sex, without actually saying, “If we’re going to have sex tonight, you ought to know…” For example, some folks may mention that their medication effects their appetite, others may mention the fact that they can’t do press-ups. Okay, I just thought of half a dozen terrible euphemisms, but I’m sure there are ways of subtly getting across that you have a limitation in the bedroom department. Now I've got the giggles.
5. Be enthusiastic
I am not suggesting that this should all come out in one conversation, but should trickle out over time. Some of this stuff has to be repeated, or reapplied to new situations.
One thing I would recommend is to always try to express enthusiasm about any suggestions people make - unless you genuinely don't want to be involved. Sometimes when someone suggests something which is either impossible for you or would cause immense difficulty, it is tempting to make out you don't fancy it, or even be angry at the suggestion. Unfortunately, as with sulking, other people may struggle to figure this out, and assume you're not interested in anything. Disinterest, rather than incapacity, is what makes a person seem boring.
So, when someone invites you skydiving, your answer should always be
"Oh, I would love to go skydiving! That sounds fantastic! Unfortunately, you have forms from your doctor to say you are medically fit and mine would never go along with that."
It also helps to blame someone else but...
6. Never use your impairment as an excuse
I guess we all do, sooner or later, but this can be immnensely costly if those we rely on figure this out. Especially if you have an invisible impairment, the disadvantages of which Lady Bracknell has described. If you want to get out of something, but wish to spare feelings, there are plenty of other excuses to be had. A policy of honesty is ideal, but certainly non-disabled people manage to excuse themselves from activities without too much trouble - so can we.
7. Be assertive
This is very difficult to explain, and highly subjective, so I will discuss a real example involving not lovers or friends, but family:
When I was down south, my sister came to stay for twenty-four hours. I was having a bad day, but the others fancied going out. So, during those few hours which may yet be the only time we see R this year, my Mum, Dad and Rosie decided to go out for a pub lunch without us. There wasn’t anywhere specific they wanted to go, just out of the house for a bit. They did of course ask, “You don’t mind if we go out, do you?” more than once, but what could we say?
Unfortunately, especially as far as my family are concerned, I am absolutely incapable of standing up and saying, “Yeah I do mind; you don’t need to go out, but I need to stay here. This is a rare opportunity for us to be together. If we are such dreadful company, we will pack up and go as soon as my health permits so you need suffer us no longer than absolutely necessary!”
The fear is of course that people are going to then grudgingly hang around, that folks are going to resent you. So instead, I avenged myself by finishing the cake for lunch so there was none left for anyone else. Ha ha ha! Ha ha ha! Ha ha ha ha ha!
If any of the family are reading this, it is forgotten, really it was no problem; it just came to mind again as an example. Honest. Really. Ha ha ha! Ha ha ha! Ha ha ha ha ha!
Thing is, there must have been a way I could have handled this without this passive-aggressive nonsense. Some middle way between saying nothing and being noticeably angry. Uh…
“You don’t mind if we go out, do you?”
“Well, I would like to go out myself, just to spend time with you and especially Rosie who is only here for a short time. Unfortunately, I really can’t, I’m really not up to it today. But I’m not so ill that I can’t enjoy your company. I am sure there are nice things to eat in the house – like that cake for instance.”
Then if they said, “Oh but we’re bored around the house, we want to go out.” Well, then one has a right to be cross, and express disappointment. However, I think that if I had managed the above rather than saying nothing at all, they would have hung around without resentment and everyone would have been happy.
It is of course based on the premise that there is nothing to be gained by pretending that your impairment doesn’t exist or is not so severe as it is. Doing this greatly increases the chances of overexertion, embarrassment and awkwardness, physical danger, causing upset or offence to other people and generally having a bad time. This is especially the case with close friends and lovers because these people expect you to trust them and in turn, trust you to tell them anything they need to know.
Nobody wants to make a song and dance about their medical problems or impairments, but the only way to reduce the impact these things is to put certain steps in place. Part of that is to give other people the relevant information. I find the following rules to be extremely useful:
1. Do not include unnecessary medical information.
When people used to ask what was wrong with me, my heart used to sink. This is because I felt that (a) I was obliged to give an honest answer and (b) I was obliged to answer with complicated medical information that the questioner was unlikely to fully comprehend.
In fact, apart from doctors and perhaps my next of kin, nobody needs to know my medical diagnosis. And whilst labels by themselves are no problem, folks do get distracted by this stuff; So what causes that then? Will you get better? Is it going to kill you? Is it contagious? Do you think perhaps the government is trying to poison you as part of a biological weapons experiment?
All these questions and more, I have been asked. None of these effect the way I live my life. And this is one of the main reasons I avoid mention of my diagnosis on the blogosphere (that and the fact that I think I am being poisoned by the government and don’t want them to know I know…).
If you are in any kind of relationship of trust, all a person needs to know is the practical effect of your condition or impairment. Providing a diagram of why this is the case will distract them and make it more difficult for them to take it in. If the medical side is of interest, save that for another conversation.
2. Do not include unnecessary emotional information.
There will come a time in any relationship where you sit down, get drunk and describe your distressing childhood, your tragic accident, your narrow escape from the jaws of death and how you recovered to drag yourself up Ben Nevis by the strength of your little finger.
Like medical information, this stuff is a big distraction. Give people a choice between a factual bit of information and an emotional piece of information, they’ll go for the emotional one and forget everything else. If you say, “I had a nasty accident when I was young and I can’t bend in the middle.”
You’ll get, “My god! What happened?!”
And you’ll have to explain all about it, answer further questions. And after profound expressions of sympathy and admiration, the other person will ask you to pick something up off the floor, having completely forgotten that you can’t bend in the middle.
Use calm, matter-of-fact language. For example, when describing pain, you don’t need to say, “It really really hurts,” merely, “It hurts and I can only stand for a moment” or whatever is relevant to you. I know it may sound silly, but anything which inspires sympathy is going to make it more difficult for someone to take in facts.
3. Keep your feelings in word form.
If you do feel that the piece of information you need to get across is a big deal, or if it makes you very nervous to talk about the subject, it is far better to say as much without it actually being self-evident. It is far better to calmly say, “I’m really worried how you might feel about X.” than to turn bright red, start shaking and express whatever your problem is in a squeaky voice.
The latter looks so uncomfortable that the other person is going to wish to change the subject and put you out of your misery. They are not going to wish to return to the subject because they won’t want to upset you. If you can express your concern in words but calmly, then you have revealed your vulnerability but are still able have a conversation about it. A degree of vulnerability can be attractive; terror is not.
Similarly, if you become frustrated when people let you down and ignore your limitations, state it in plain words, “I am frustrated/ angry/ disappointed.” Losing your temper will cause others to be defensive. And whatever you do, don’t sulk or make a complaint in a roundabout way – if people have forgotten or ignored your limitations, only a verbal reminder is going to get the message across.
4. Give practical examples.
Some limitations like pain, fatigue and perhaps most especially limitations related to mental ill health really need spelling out. Everyone gets achey, everyone gets tired and everyone feels sad or anxious from time to time. You have to make sure they know your problem is much more than that.
The best way of getting any limitation across is to give a real-life example of practical consequences – this is the case whether talking to a potential lover, a doctor or filling in your DLA forms. As far as social and romantic situations are concerned, an example might be that instead of saying, “I am tired all the time!” you might say, “I have a very limited stamina, so I may have to go home early.” Instead of saying, “I’m terrified of talking on the phone!” you might say, “On a bad day, I have to let the answer-machine pick up my calls for me.”
You can also use this to get across information which may effect sex, without actually saying, “If we’re going to have sex tonight, you ought to know…” For example, some folks may mention that their medication effects their appetite, others may mention the fact that they can’t do press-ups. Okay, I just thought of half a dozen terrible euphemisms, but I’m sure there are ways of subtly getting across that you have a limitation in the bedroom department. Now I've got the giggles.
5. Be enthusiastic
I am not suggesting that this should all come out in one conversation, but should trickle out over time. Some of this stuff has to be repeated, or reapplied to new situations.
One thing I would recommend is to always try to express enthusiasm about any suggestions people make - unless you genuinely don't want to be involved. Sometimes when someone suggests something which is either impossible for you or would cause immense difficulty, it is tempting to make out you don't fancy it, or even be angry at the suggestion. Unfortunately, as with sulking, other people may struggle to figure this out, and assume you're not interested in anything. Disinterest, rather than incapacity, is what makes a person seem boring.
So, when someone invites you skydiving, your answer should always be
"Oh, I would love to go skydiving! That sounds fantastic! Unfortunately, you have forms from your doctor to say you are medically fit and mine would never go along with that."
It also helps to blame someone else but...
6. Never use your impairment as an excuse
I guess we all do, sooner or later, but this can be immnensely costly if those we rely on figure this out. Especially if you have an invisible impairment, the disadvantages of which Lady Bracknell has described. If you want to get out of something, but wish to spare feelings, there are plenty of other excuses to be had. A policy of honesty is ideal, but certainly non-disabled people manage to excuse themselves from activities without too much trouble - so can we.
7. Be assertive
This is very difficult to explain, and highly subjective, so I will discuss a real example involving not lovers or friends, but family:
When I was down south, my sister came to stay for twenty-four hours. I was having a bad day, but the others fancied going out. So, during those few hours which may yet be the only time we see R this year, my Mum, Dad and Rosie decided to go out for a pub lunch without us. There wasn’t anywhere specific they wanted to go, just out of the house for a bit. They did of course ask, “You don’t mind if we go out, do you?” more than once, but what could we say?
Unfortunately, especially as far as my family are concerned, I am absolutely incapable of standing up and saying, “Yeah I do mind; you don’t need to go out, but I need to stay here. This is a rare opportunity for us to be together. If we are such dreadful company, we will pack up and go as soon as my health permits so you need suffer us no longer than absolutely necessary!”
The fear is of course that people are going to then grudgingly hang around, that folks are going to resent you. So instead, I avenged myself by finishing the cake for lunch so there was none left for anyone else. Ha ha ha! Ha ha ha! Ha ha ha ha ha!
If any of the family are reading this, it is forgotten, really it was no problem; it just came to mind again as an example. Honest. Really. Ha ha ha! Ha ha ha! Ha ha ha ha ha!
Thing is, there must have been a way I could have handled this without this passive-aggressive nonsense. Some middle way between saying nothing and being noticeably angry. Uh…
“You don’t mind if we go out, do you?”
“Well, I would like to go out myself, just to spend time with you and especially Rosie who is only here for a short time. Unfortunately, I really can’t, I’m really not up to it today. But I’m not so ill that I can’t enjoy your company. I am sure there are nice things to eat in the house – like that cake for instance.”
Then if they said, “Oh but we’re bored around the house, we want to go out.” Well, then one has a right to be cross, and express disappointment. However, I think that if I had managed the above rather than saying nothing at all, they would have hung around without resentment and everyone would have been happy.
Friday, June 23, 2006
How to live long and stay healthy
This has to be the health advice to end all health advice: Don't use your mobile phone outside, in an open space during a thunderstorm. It is extremely unfortunate that one young woman suffered serious injuries after being struck by lightning whilst on her mobile phone. Injuries more serious than if she hadn't been on the phone, as the phone increases the amount of energy which enters into your body.
However
(a) There is still an only one in three million chance of someone in the UK being struck by lightning in the first place (Americans get struck more often - they're far more religious).
(b) Using a mobile phone does not effect your chance of being struck by lightning, only the damage it might cause if it does.
(c) Wearing any kind of jewellery or an underwired bra would increase injury in a similar way.
So let's recount some sensible advice about thunderstorms, if you happen to be stuck outside, don't go anywhere near trees, pylons, poles or bodies of water. Get to low open ground as soon as possible. If you are somehow stuck in a high exposed place, discard anything metal on your person (including your pockets). Crouch down with your head between your knees, but in such a way that your body is in contact with the ground as little as possible.
And when you are safely indoors, don't use the landline phone either. In fact, unplug any electronics from the landline - I have had a busted modem when lightning came down the line, it does happen.
However, for persons being struck it is still one in three million. There may be a slightly more worthy subject matter for the BBC News website's health pages.
However
(a) There is still an only one in three million chance of someone in the UK being struck by lightning in the first place (Americans get struck more often - they're far more religious).
(b) Using a mobile phone does not effect your chance of being struck by lightning, only the damage it might cause if it does.
(c) Wearing any kind of jewellery or an underwired bra would increase injury in a similar way.
So let's recount some sensible advice about thunderstorms, if you happen to be stuck outside, don't go anywhere near trees, pylons, poles or bodies of water. Get to low open ground as soon as possible. If you are somehow stuck in a high exposed place, discard anything metal on your person (including your pockets). Crouch down with your head between your knees, but in such a way that your body is in contact with the ground as little as possible.
And when you are safely indoors, don't use the landline phone either. In fact, unplug any electronics from the landline - I have had a busted modem when lightning came down the line, it does happen.
However, for persons being struck it is still one in three million. There may be a slightly more worthy subject matter for the BBC News website's health pages.
Thursday, June 22, 2006
Oh, life
I am having a difficult week. Last weekend I learnt that one of my irrational bad feelings was in fact perfectly justified (or almost; could have been worse, could have been much worse - no deaths, thank God) and ever since I have been in a state. Partly because of the bad thing, but partly because my levels of self-trust have risen somewhat and all the demons that usually jiggle and niggle in the shadows have come out to do a little dance in the sunshine.
For the third time in a week, one of my friends is missing. The first one, see above. The second was on a scheduled trip away from home, I simply got confused about the timing and panicked. A real imaginative panic, though.
This time it is P, who we were supposed to meet to watch the sunset. I phoned to cancel yesterday, leaving an answering-machine message and a request to phone back, plus I sent an e-mail. But I hadn’t even had a confirmation from him that he was coming. There’s no way he would be sulking about my not being well enough to come out or anything like that.
(Incidently, I was disappointed about the sunset, but later relieved; [...] walked up the beach and said it was cold, windy and the sun disappeared behind cloud before it fell into the sea.)
P often goes quiet for a few days. For one thing, he does have bad days, which he literally spends staring into space. And he has profound short-term memory issues; you never leave the house to go meet him without having confirmed that he knows what day it is and what's going on.
Only, I haven’t heard anything since Monday and I left an answering-machine message and sent e-mails yesterday. So I'll be completely distracted until (I'm sure) I hear that he's finde and dandy and just got in a bit of a muddle.
Also, I have another wisdom tooth coming through and seem to have developed some sort of allergy to music. Here is the unlikely playlist of Songs Which Have Set Me Off Crying this week so far:
I say a little prayer – Aretha Franklin
Heroes – David Bowie
Friday, I’m in love – The Cure
Are Friends Electric? – Gary Numan
Angie – The Rolling Stones
I mean, Angie for cripe’s sake. None of them are even vaguely tear-jerking, are they? Don’t worry, all my tears have had a musical accompaniment, and this is over a week – that’s less than one cry a day, but then only for a week. Before then, it had been a long while. This is a reactive episode not an ongoing state.
So this afternoon I decided to purge. I sat down and listened to
Fire and Rain – James Taylor
Hurt – Johnny Cash
Losing My Religion - REM
Let It Be – The Beatles
Dock o’ the bay– Otis Redding
That should just about do it. Now need to rehydrate.
Note to Self: Subject all future candidates to full medical exam before admittance to heart.
Uh no, not really.
For the third time in a week, one of my friends is missing. The first one, see above. The second was on a scheduled trip away from home, I simply got confused about the timing and panicked. A real imaginative panic, though.
This time it is P, who we were supposed to meet to watch the sunset. I phoned to cancel yesterday, leaving an answering-machine message and a request to phone back, plus I sent an e-mail. But I hadn’t even had a confirmation from him that he was coming. There’s no way he would be sulking about my not being well enough to come out or anything like that.
(Incidently, I was disappointed about the sunset, but later relieved; [...] walked up the beach and said it was cold, windy and the sun disappeared behind cloud before it fell into the sea.)
P often goes quiet for a few days. For one thing, he does have bad days, which he literally spends staring into space. And he has profound short-term memory issues; you never leave the house to go meet him without having confirmed that he knows what day it is and what's going on.
Only, I haven’t heard anything since Monday and I left an answering-machine message and sent e-mails yesterday. So I'll be completely distracted until (I'm sure) I hear that he's finde and dandy and just got in a bit of a muddle.
Also, I have another wisdom tooth coming through and seem to have developed some sort of allergy to music. Here is the unlikely playlist of Songs Which Have Set Me Off Crying this week so far:
I say a little prayer – Aretha Franklin
Heroes – David Bowie
Friday, I’m in love – The Cure
Are Friends Electric? – Gary Numan
Angie – The Rolling Stones
I mean, Angie for cripe’s sake. None of them are even vaguely tear-jerking, are they? Don’t worry, all my tears have had a musical accompaniment, and this is over a week – that’s less than one cry a day, but then only for a week. Before then, it had been a long while. This is a reactive episode not an ongoing state.
So this afternoon I decided to purge. I sat down and listened to
Fire and Rain – James Taylor
Hurt – Johnny Cash
Losing My Religion - REM
Let It Be – The Beatles
Dock o’ the bay– Otis Redding
That should just about do it. Now need to rehydrate.
Note to Self: Subject all future candidates to full medical exam before admittance to heart.
Uh no, not really.
Wednesday, June 21, 2006
Every day I look at the world from my window
We were supposed to be going up to the West Cliff to watch the sun set over the sea this evening, but it ain't going to happen. Still, here is last year's picture.
Hope everyone is having a pleasant solstice.
Hope everyone is having a pleasant solstice.
This is a picture taken at the Solstice in Whitby by my friend Pete, first published here, this time last year. Please do not copy it without permission; the copyright does not belong to me.
Tuesday, June 20, 2006
Suffering Succotash
Bit heavy today. Am in dark and heavy mood.
I have long felt that the thing which makes us truly moral beings isn’t the fact that we can devise rules about what is right and wrong and live by them. The thing which makes us truly moral beings is our capacity to navigate the grey areas, our capacity to recognise that in some situations, one cannot make a choice that is completely and utterly comfortable. That’s what makes us amazing, really; that we are not completely paralysed when forced to determine the lesser of two evils.
Unfortunately, none of us are up to the task all the time. When I look at discussions about abortion and euthanasia, whether it's proposed legislation here or abroad or new technologies in development, all I see are the same black and white arguments being made over and over. And given that we are talking about life and death, some of the most serious moral questions for society, you would think that we would acknowledge that these decisions are all grey – no decisions can be made around abortion or euthanasia, the outcome of which is wholly good. The situations where these questions arise always involve some tradegy.
Now some people have religious beliefs that I don’t subscribe to, but even religion acknowledges that sometimes our greatest deeds involve the compromise of a profound moral principle. For example, despite the fact that life is sacred and suicide a mortal sin, one of the greatest things a person can ever do is to give up their life in order to save another person or in the name of their God.
Similarly, whilst our culture and in particular our medical profession is geared up towards the preservation of life (including pregnancy) as the primary objective, perhaps there may be extreme circumstances where there is virtue in breaching this principle. I do believe that.
However, all around I still see folks attempting to simplify this as all life is sacred and must be preserved or all suffering is intolerable and must be avoided. And whilst I am no kind of moral relativist, neither of these are useful starting points.
Take suffering…
Fact is that honestly, truly, absolutely, I believe that I have an excellent quality of life, despite my morbid compulsion to italicise in almost every sentence.
However, this quality of life is extremely fragile and dependent on a number of unstable factors which make life enjoyable as opposed to barely tolerable. I suffer; I have pain and various symptoms which are challenging to live with. Sometimes life is very hard. Sometimes life seems hopeless. But when things are bad, the thing that gets me is fear of things getting worse, or the worst days becoming normal.
This is so scary, so very scary, that I actually comfort myself with the idea that if it ever gets that bad or goes on that long, then I can always opt out.
Now that might just be a game I play to cope; I haven’t contemplated suicide in a long, long time. And the funny thing is that sometimes it does get worse and the bad days do go on and on, but when this happens, it isn’t nearly as bad as I anticipated.
It has been noted among disabled people that many of us consider ourselves more fortunate than those with a completely different impairment – who in turn consider themselves more fortunate than us. And some non-disabled people tend to feel sorry for all of us, often baffled at how any of us cope.
This is a very simple but fundamental limit of the imagination; we don’t know what it’s like for the other guy. And in general when it comes to medical matters, we tend to imagine it to be really very bad indeed. (The bizarre exception being mental health impairments, where we refer to our own everyday experiences of frustration and melancholy and imagine it’s a bit like that.)
Now I’m not for a moment taking the view that all our lives are as good as they possibly could be and being ill or impaired is no disadvantage. It is a disadvantage, it comes with all kinds of weird and wonderful problems that you’d never have dreamed of. But I always think about these little machines exploring miles and miles under the ocean. Just when you’re sure that you’rer so far down that no organic life could ever survive those pressures, there is the campest-looking crustacean you have ever beheld. It prospers in the deepest darkest places of on the planet. If it gets down-hearted about its place in the universe, it just looks in a mirror.
Similarly with pain, indignity, suffering and so on; it is amazing what people can endure, the lives which remain worth living. The places that we find humour
And it is amazing what some people consider unendurable, and on what grounds. Ballastexistenz writes about folks wanting to eliminate people like herself from the gene pool, simply because of the alleged blank stare on her face. Because she doesn't look like she's having too much fun? Are we all going to have to Botox our faces into an eternal grimace?
And this kind of thing is one of the two major problems. The other is that, with all due respect to the medical profession and the very many conscientious and caring professionals out there, there remains a culture of paternalism; some professionals claim moral authority as well as medical expertise. Patients are inexpert, therefore irrational; they can't be trusted to know their own wishes.
This is complicated by the fact that despite its merits (and believe me, there are a great many) people within the health system can be seen, at times, as economic units.
And thus, this country has only begun to debate the subject of euthanasia and already some "expert" suggests that consent should not be necessary
I have long felt that the thing which makes us truly moral beings isn’t the fact that we can devise rules about what is right and wrong and live by them. The thing which makes us truly moral beings is our capacity to navigate the grey areas, our capacity to recognise that in some situations, one cannot make a choice that is completely and utterly comfortable. That’s what makes us amazing, really; that we are not completely paralysed when forced to determine the lesser of two evils.
Unfortunately, none of us are up to the task all the time. When I look at discussions about abortion and euthanasia, whether it's proposed legislation here or abroad or new technologies in development, all I see are the same black and white arguments being made over and over. And given that we are talking about life and death, some of the most serious moral questions for society, you would think that we would acknowledge that these decisions are all grey – no decisions can be made around abortion or euthanasia, the outcome of which is wholly good. The situations where these questions arise always involve some tradegy.
Now some people have religious beliefs that I don’t subscribe to, but even religion acknowledges that sometimes our greatest deeds involve the compromise of a profound moral principle. For example, despite the fact that life is sacred and suicide a mortal sin, one of the greatest things a person can ever do is to give up their life in order to save another person or in the name of their God.
Similarly, whilst our culture and in particular our medical profession is geared up towards the preservation of life (including pregnancy) as the primary objective, perhaps there may be extreme circumstances where there is virtue in breaching this principle. I do believe that.
However, all around I still see folks attempting to simplify this as all life is sacred and must be preserved or all suffering is intolerable and must be avoided. And whilst I am no kind of moral relativist, neither of these are useful starting points.
Take suffering…
Fact is that honestly, truly, absolutely, I believe that I have an excellent quality of life, despite my morbid compulsion to italicise in almost every sentence.
However, this quality of life is extremely fragile and dependent on a number of unstable factors which make life enjoyable as opposed to barely tolerable. I suffer; I have pain and various symptoms which are challenging to live with. Sometimes life is very hard. Sometimes life seems hopeless. But when things are bad, the thing that gets me is fear of things getting worse, or the worst days becoming normal.
This is so scary, so very scary, that I actually comfort myself with the idea that if it ever gets that bad or goes on that long, then I can always opt out.
Now that might just be a game I play to cope; I haven’t contemplated suicide in a long, long time. And the funny thing is that sometimes it does get worse and the bad days do go on and on, but when this happens, it isn’t nearly as bad as I anticipated.
It has been noted among disabled people that many of us consider ourselves more fortunate than those with a completely different impairment – who in turn consider themselves more fortunate than us. And some non-disabled people tend to feel sorry for all of us, often baffled at how any of us cope.
This is a very simple but fundamental limit of the imagination; we don’t know what it’s like for the other guy. And in general when it comes to medical matters, we tend to imagine it to be really very bad indeed. (The bizarre exception being mental health impairments, where we refer to our own everyday experiences of frustration and melancholy and imagine it’s a bit like that.)
Now I’m not for a moment taking the view that all our lives are as good as they possibly could be and being ill or impaired is no disadvantage. It is a disadvantage, it comes with all kinds of weird and wonderful problems that you’d never have dreamed of. But I always think about these little machines exploring miles and miles under the ocean. Just when you’re sure that you’rer so far down that no organic life could ever survive those pressures, there is the campest-looking crustacean you have ever beheld. It prospers in the deepest darkest places of on the planet. If it gets down-hearted about its place in the universe, it just looks in a mirror.
Similarly with pain, indignity, suffering and so on; it is amazing what people can endure, the lives which remain worth living. The places that we find humour
And it is amazing what some people consider unendurable, and on what grounds. Ballastexistenz writes about folks wanting to eliminate people like herself from the gene pool, simply because of the alleged blank stare on her face. Because she doesn't look like she's having too much fun? Are we all going to have to Botox our faces into an eternal grimace?
And this kind of thing is one of the two major problems. The other is that, with all due respect to the medical profession and the very many conscientious and caring professionals out there, there remains a culture of paternalism; some professionals claim moral authority as well as medical expertise. Patients are inexpert, therefore irrational; they can't be trusted to know their own wishes.
This is complicated by the fact that despite its merits (and believe me, there are a great many) people within the health system can be seen, at times, as economic units.
And thus, this country has only begun to debate the subject of euthanasia and already some "expert" suggests that consent should not be necessary
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